"You think this is hard?!"

I love the show Glee. It cracks me up on many levels. One of my favorite characters is that of Sue Sylvester. Sue has a series of lines which begin with, "You think this is hard?..." One of my favorites: "You think this is hard? I'm passing a gallstone as we speak. That is hard!"

So, why this little burst of random thought? I just filled out what feels like the thousandth questionnaire relating to autism for Max. As mentioned before, we are participating in a grant-based study called the PLAY Project. Today is our monthly meeting with April, our consultant. I had started to fill out the questionnaires, then figured I had a while to do them, then realized I hadn't finished them... thank God school was over. Truth be known, it takes a lot out of us as parents to fill out these particular questionnaires.

Anyway, it made me think of persons who believe that autism spectrum disorders are overdiagnosed, akin to ADD/ADHD. Since I have been involved with both types of diagnoses, I can say, with certainty, that autism diagnoses are not gotten easily. For ADD/ADHD, as a teacher, I have filled out what seems to be the most popular form for pediatricians: the Vanderbilt. There's also a Conners' rating scale that is used, but that is typically a psychologist's tool. The Vanderbilt is a 1-1/2 page scale with several different statements for a teacher to rate. I believe a parent rates the child as well. I had a student go to a pediatrician one day and come back the next day with an ADHD diagnosis and a prescription.

With ASD, as a parent, I have filled out booklet after booklet assessing both Max and Ignatius. Today's three booklets were the CARS2-QPC, the REEL-3, and the Greenspan Social-Emotional Growth Chart. Before diagnosis, I filled out booklet after booklet. Teachers filled out booklets for Ignatius as well. Then the developmental pediatrician spent over an hour with Max and over an hour with Ignatius. With Ignatius, we went to The Autism Program for an entire day of tests, in addition to filling out their booklets. The diagnoses took close to a year. Am I sure my kids are on the spectrum? Why, yes, I am. Am I sure some of my students who are diagnosed with ADD/ADHD have been adequately diagnosed? Mmm, somewhat.

My blood pressure elevates a bit when I turn on the radio or TV and am assaulted by opinions of persons who think they/claim to know what they are talking about. Anyone that you hear on TV who thinks ASD are being overdiagnosed has done little to no homework on the issue. Parents don't go around saying, "Hmmm, how can I get my child diagnosed with autism?" And the statements on the questionnaires just remind you, again, how neurologically atypical your child is. Every. Single. Time. I get to look at a list of developmental descriptors for my son, and I get to see how he differs from what's considered normal growth.

Yes, since it is a day-to-day thing we live with, one might say, after a while, I'll get tougher skin about the "facts" of my life. Truth be known, my skin is pretty damn tough right now. Until my kids are together with their biological-age peers, or even kids younger than they. Then the skin gets a little thinner. And things seem pretty unfair. I think any parent with a child that has a developmental struggle...be it a physical issue or a social-emotional issue... knows what I am talking about. Field day at the end of the school year, for example. The typical student goes off to school and has a great time. The atypical student might have a physical setback that makes that day extraordinarily difficult, not to mention exhausting, or might have an issue with overstimulation that makes a major meltdown inevitable.

My inner Sue Sylvester wants to scream, "You think this is hard? I'm raising two children with autism. That's hard!"